Wednesday, March 26, 2008

Argh and wow

OK, so I know that it is hard to do SCD when your kid is attending a public school. I know it's especially challenging when at least 80 percent of the kids qualify for free breakfast and lunch.

But how hard is it to understand that our son is to have NO FOOD that is not from home?

Apparently a teacher gave Clark three Skittles. He explained that he thought they were OK because they were a different color than regular Skittles.

And this person is allowed to educate children? Next time I'm going to ask him what color of sugar doesn't have sugar in it. *growl*

The interesting thing though didn't really mess Clark up much at all. This is a kid who spiraled out of control for TWO WEEKS after getting a mini candy cane at Christmas.

Clark told us he ate three Skittles after we asked. But apparently he is bouncing back from it fast. Yes, he had behavior and sleep issues for about four days, but he would have those same issues from eating a vegetable that didn't agree with him previously.

So I think he is definitely healing.

And today was a conversation EXPLOSION!

"I have a grizzly bear on my shirt! Dinosaurs eat snacks sometimes, if they're hungry. Can I have a snack? Oh hey guess what guys, did you know I'm going to the aquarium tomorrow? It's nice and they have fish."

I am stunned. Literally stunned.

Yay Clark!

Tuesday, March 25, 2008

A new rheumatologist who listens!

So yesterday I made the trek out to the Arthritis Center of Riverside to see a new rheumatologist.

I've been waiting for quite a while until I got my new insurance specifically so I could go to these people. They are very interested in finding the causes of inflammation, and they've done a lot of research on infectious agents and their role in RA. They've written some interesting stuff about mycoplasmas, which are tiny little organisms that seem to be found in much greater numbers in people with RA, specifically within the joints.

They are NOT holistic. I want to make that clear. They will write prescriptions for DMARDs when necessary, but they also have a very cool low dose antibiotic protocol treatment that seems to be very effective. Many patients actually achieve remission this way.

This was my initial appointment, and I was nervous at first. All new patients see Dr. Lallande at first, an osteopath, which means he has D.O. after his name instead of M.D. Osteopaths are capable doctors in this country, so don't confuse them with the osteopaths in the U.K., who are in fact naturopaths and not medical doctors. My own general practitioner is an osteopath and Dr. Lallande seems to follow the same functional medicine philosophy. Dr. Lallande is a cheerful man with a salt and pepper crew cut, very animated and completely interested in what I was saying. I've never felt more at ease.

I started telling him about the dietary changes I'd made and the progress I'd found due to it. I told him I was now following the specific carbohydrate diet.

I paused when he seemed to continue to be friendly, instead of clamming up. I then asked him if he'd heard of the diet.

He had!


He then specifically wanted to hear about my autistic son, and what I thought caused his autism. His own son had received a bunch of vaccines at once, and had experienced some extreme OCD-like behaviors for a few years, so he was curious to know if I thought vaccines triggered his autism. He had also changed his son's diet and done interventions that helped him. Personally I don't think vaccines triggered Clark's problems, but to have a doctor acknowledge the experience of many, many parents over the current medical studies was really something. He thought it was great that my research had helped me and my son so much.

He said, "Keep doing your research! We don't know everything!" Then he smiled, and said, "If somebody had told you, 'You're going to get this disease, and it's a really serious disease, but in getting it, you're going to learn how to help your son,' would you have signed up?"

I said, "Absolutely."

He said, "Of course you would. Every mother would."

Then we moved on to the actual exam. He thought I was doing pretty well. He even remarked to his assistant, "See, she's good, she learned how to treat herself." He checked me for fibromyalgia as well, so they treat that too! Hey fibro people, you should check these people out!

He then proclaimed me to be in excellent health, except for the RA, which is pretty much what every doctor says. :)

Then it was off for blood work, and I come back in May for X-rays and an appointment with the facility's director. He told me that there will be supplements and possibly the antibiotic protocol once they learn what they can from my tests, but if I feel I need Enbrel to hold me over until the other stuff starts kicking in, then I should call and let them know. He told me it can take up to six months for the protocol to really start working, so they will try to minimize my damage in the meantime while we're waiting.

All in all, I was just so thrilled with the appointment. I wanted to hug him, but since I was wearing one of those gowns, I think it would have been a little awkward.

Monday, March 24, 2008

SCD and the doctor

I don't even know where to begin. I guess at the beginning. That's good, right?

Over the past three weeks or so, Clark has been off again, on again sick. However, about two weeks ago, he went from a sniffly nose to a hacking deep cough in the span of about eight hours. He also spiked a high fever, around 104 degrees.

I don't freak out when my kid gets sick. I don't like taking him to the doctor. Kids get sick; it's what they do, and most of the time there's nothing you can do about it except wait it out. Their school environment is like a virus factory.

But this did worry me, and so we took him in. We found out he had pneumonia (joy) and he had his first chest X-ray. This brought back a lot of memories for me, because as a child, I had pretty bad asthma. I had pneumonia multiple times, and bronchitis more times than I could count. I learned to sleep sitting up, and as a result, I can sleep pretty much anywhere at any time, much to the envy of some of my friends.

When my son's doctor told us she wanted to prescribe antibiotics, I told her that sugar caused huge problems for Clark, so perhaps she could give us something sugar free that we could crush and mix up with something. She prescribed Augmentin, which is a combo of two antibiotics, amoxicillin and clavulanate, and she gave it to us in a tablet form that was OK to crush and mix with applesauce, much to my relief. I knew the pills would likely contain corn starch, but I was OK with that short term.

My pediatrician, who is a really cool lady, did caution that the antibiotic might cause diarrhea, so she suggested we give him L. acidophilus along with the antibiotic. While that was a great suggestion, I can't find any that's SCD legal locally, and the stuff from GI Pro Health is on back order. So we just decided to wait it out and see what would happen.

After the first dose, I had a nightmare where Clark literally turned into a monster and was eating my hand with very sharp teeth. My husband pointed out that I was afraid Clark would go back to the way he was pre-SCD, and my mind interpreted this literally.

Clark was OK with the antibiotic. He did start to regress around day three or four, much to our dismay, but it wasn't severe.

And then, on about day 7, we got Clark up for school and he was covered in a bright red rash.

Guess what? He's allergic to penicillin. *head on desk*

So we took him in to the doctor while the reaction continued to worsen. The doctor noticed Clark was a little short of breath, so he got a breathing treatment of what I assume was albuterol. Once again, I was hit by memories of my childhood while he sat on my lap with a mask over his face, and I chatted with him while we waited for the medicine to run down.

We were instructed to give him Benadryl, and I mentioned the problem with sugar again. We found him a kids chewable version with NutraSweet, and we tried that. We were sent home with instructions to keep an eye on him for the next 4-6 hours to see if his breathing worsened again.

We ended up giving him two doses of the Benadryl, and it really didn't seem to help him much. He was also getting weepy and emotional and I figured I should switch to something without the NutraSweet and artificial colors. I was also worried because the rash seemed to continue to worsen. So I picked up some generic Zyrtec tablets and crushed one for him. The dosage is the same for anyone ages 6 and up, and it lasts for 24 hours. I carefully checked the package and it didn't say you couldn't crush them, so I figured it was OK.

The next morning Clark was definitely more cheerful, even though he didn't look much better. I had looked up the ingredients on the Zyrtec in the meantime and one of them did have an extended release component. Since I was worried, I grabbed the same product at Target and asked their pharmacist if it was extended release -- it wasn't, and she said it was OK to crush. Whew.

So far, so good. The Zyrtec tablets do contain starch and a teensy bit of lactose, but they are very small and I think Clark is doing really well with them.

The interesting thing is, I realized Clark has never had antibiotics until now, and I wonder if that's why he's only mildly autistic instead of much worse. I managed to explain a little bit about SCD to his regular pediatrician and she was slightly mystified but didn't try to dissuade us.

And now it's my turn. I'm leaving work early today to go to an arthritis institute, and I'm a little nervous about it. See, even though my son and I have only been SCD for a little while, I've been tinkering with diet changes for the past three years because cutting out grains has REALLY helped my arthritis. Every time I go to a new rheumatologist I have to be prepared, because every time I tell them the diet changes that have helped me, and every time, I get the silent treatment because they don't believe me. I don't know if it will be different this time, but I am resolved.

Sunday, March 9, 2008

Cooking marathon!

I know you've missed these, haven't you? Of course you have!

So, this past week has been a bit of a nightmare. On Monday, my husband said, "It seems like the fridge isn't getting things as cold as they should be." I just shrugged; it's hard to say, especially when the thing is opened about a million times a day, and it's not like our five year old hasn't ever left it cracked open.

By the next day, though, it was apparent that things were getting quite warm.

I should also mention at this point that I live in an apartment in Southern California. In SoCal, fridges are not provided with apartments. I don't know why. It's totally stupid. But it's just how it is. So when we moved to California from Chicago, the first thing we had to do was buy a fridge. Our good friends recommended a used appliance store in Burbank called Savon Appliances, so we went there, picked out a model, and it was delivered the same day. Great place, great people, great service. That was nearly two years ago, and it was an older model fridge, so we weren't really that surprised.

I plugged in my nifty digital thermometer and dangled it off a shelf in the fridge. It registered at 50 degrees. My husband called the local used appliance shop where we got it to see if they did repairs. They did, but they didn't have anyone until Friday. We resolved to wait.

Despite taking care not to open it too much, by the end of the day it was hovering at about 59 degrees. Not good. Not good AT ALL.

On Wednesday I took my probiotics to work and stuck them in the fridge, hoping for the best. I had a bottle of yogurt starter and a bottle of S. Boulardii that I hadn't even opened yet. We started throwing things out Wednesday night, and we also cooked the rest of the thawed chicken parts in the fridge. We then scrambled four dozen eggs, partitioned them out (six eggs to a baggie) and froze those too.

I made my son's egg bread and froze it. To my surprise, it freezes beautifully. It doesn't even stick together. Cool. Also, very thankfully, the legal jello was still setting up in the refrigerator for some reason. We were at the tail end of a jug of Welch's grape juice so that wasn't a big disaster.

We ended up pitching a lot of hubby's condiments, one extremely expensive dose of Enbrel, some veggies, and about three pounds of butter. I kept cooking hamburger patties and chicken breasts in the oven, and I returned them to the freezer once they cooled down. I prepared veggies every night instead of a few days in advance so my son would have some for his lunches.

Bottom line, we survived, and when the repairman came by to tell us it would be $100 to fix the fridge, we figured it would just be better to put the money toward a new used fridge. The service call was $40 but he told us it could be applied to getting another fridge if we came into the store.

Friday night, we went to Savon and picked out a new fridge. I of course drooled my way around the appliance store. It's so funny how SCD changes your view of cooking and kitchens. We settled on an absolutely fabulous GE fridge that looked as if it hadn't been used. It did have a couple of biggish dents and scratches in it, but inside, the drawers were pristine with protective plastic across the fronts.

It was bigger than our old fridge, definitely. It's about three inches taller, too. But the DOOR. MY GOD THE DOOR PEOPLE.

OMG, look at all the CRAP you can FIT in THERE!!! (Obviously this is mostly hubby stuff in the door)

It is so great.

So! The fridge was delivered Saturday at 10 a.m., and Sunday we went food shopping. I first went alone to Albertson's, brought all of that home, and then we all went to Costco. We filled up the fridge quite well, thank you, and then it was time for COOKING MARATHON!

First I threw a few pounds of pineapple spears in the oven, covered. I cut a four pound butternut squash in half and put it in an 8" square Pyrex pan. Then I started a pan of turkey soup with wings and drummettes, and I also started a pan of ketchup.

Since the pineapple and squash had to cook for two hours, I thought I might be able to fit something else in there for an hour if I hurried. I decided to make two one-pound meatloaves with spinach. That took a little while, because I had to cook the spinach, let it cool a little, squeeze out the water, then mix up the meatloaves. I put those in next to the squash.

That was phase one, and after that I got to eat and relax for the next hour.

I then took out the pineapple, checked the squash (it needed another 30 minutes), and removed the meatloaf. The ketchup was done too, so I turned it off and let it cool for the next 30 minutes.

I checked on my soup, and added green beans. Yum! I also realized in order to make egg bread for Clark's lunch, I was going to have to boil some more veggies. By this time the squash was done and the ketchup was cool, so I dumped the ketchup into a container and washed out the pan, and then put green beans in to cook.

The soup should be done...oh hey, it's done now. Crap. Well anyway, I'll turn that off and let it cool for a while. The beans might be done too. Then I will make two pans of egg bread and a batch of almond butter brownies, and we should be set for at least the beginning of this week. Yay.

Oh! and you know how I posted about the cod liver oil? Well, I missed the teeny print on the Nordic Naturals bottle that said REFRIGERATE after opening. So I threw out half a bottle. Clark has been a train wreck with sleep AGAIN and now I have it so I am happy. I also bought Carlson's cod liver oil capsule for myself to help with my RA inflammation.

And...I just got new insurance, and now I can go to the Arthritis Center in Riverside! I am soooooo excited and will keep you all posted. They believe in antibiotic therapy, which is super cool. People get cured, they really do, over there. My appointment is in two weeks!

Sunday, March 2, 2008

Cod liver oil for autistic kids

I've been leery about delving into the wide world of supplements, mainly because I've seen lots of parents of autistic kids who have their kids on something like 20 supplements a day.

I don't want to do that, mainly because I want to be able to monitor his gut healing with his dietary changes, and I think too many supplements could muddy those already complicated waters.

However, I've heard enough about cod liver oil to want to give it a try. I picked up a bottle of Nordic Naturals orange flavored cod liver oil at Whole Foods; this is a legal SCD compliant supplement.

And damn, but it is helping him already!

I had heard about some of the benefits here , (you'll note it has also been shown to help ADD/ADHD kids) but one of the other benefits I'd heard about was that it helped autistic kids with sleeping. I can't find a backup article for that, but other parents told me of that particular benefit. Clark has been on melatonin for quite some time but he still wasn't getting as much rest as we would like.

The results were pretty much immediate. Instead of routinely getting up at 4:30 a.m. or earlier, Clark is now sleeping until 5 a.m. at least. And the other day, when he did get up around 4:30, guess what? After an hour or so, he climbed back into bed and went back to sleep!

I know, for parents of kids who don't have sleep problems, that doesn't sound like much. But for those of us with sleep challenged kids, it's pretty much equivalent to the heavens opening above my head and angels descending, singing the Hallelujah chorus.

Also, he LOVES the oil. He thinks it tastes great. Hooray.

As I add a couple more things, I'll keep you all posted. Clark isn't tolerating the goat yogurt or the probiotics yet, so I have some L. Acidophilus on order and we're going to try the low and slow method of introducing it. Stay tuned!